Having a life experience that truly changes the fundamental “you” comes infrequently. There are different things that can bring this about. The loss of a loved one, being involved in a war or major conflict, a divorce or loss of a relationship, the illness of your child, and even something that is considered positive, like a Spiritual retreat or other “chosen” experiences such as travel. I feel fortunate that there have been several times in my life that I have had such an experience that shifted who I was, like childbirth and, which goes without saying, parenthood, finding my Soul mate, Buddhism, and traveling to Africa.
I must say that I have been lucky that most of my life altering experiences have come from what would generally be considered a positive place. I have not lost a loved one that was unexpected, never been in a violent conflict. Even my intense experience as a hospice nurse in Africa was chosen, which in itself changes things.
I suspect that despite the cause of transformation though, there are similar emotional experiences. For one, the total loss of who you thought you were. A flip, so to speak, of the self. A deep sense that you can no longer fit who are into who you were.

When I returned from 4 months in East Africa I felt lost and actually a bit crazy. A dear friend said at the time the best and most amazing thing when I told him that I thought I had lost my mind. “That is so great! Don’t try to get it back. Just be crazy as long as you can.” Of course he wouldn’t say this to someone who was suicidal, just a friend that he knew needed to be lost in order to find their way. This was the best advise that anyone could have given me, because truly, only coming through being completely undone could I find that part of myself that I did not know existed.

But what is this undoing, and how much is lost or gained when we do come out on the other side? Some part of me never wanted to come through to find out. Some part of me wanted to stay in Africa forever. I wonder if this is true for tragedy as well. Some part of us wants to stay even in horrible pain in order to stay connected with what has been lost. We fear that in losing the pain we will forget that familiar face or feeling.
This very human condition, whatever its cause, either excruciating or exhilarating, and sometimes both, is two sides of the same coin.

When I returned from Africa I grieved the loss of this continued opportunity to separate myself from the person who I identified with before I left. Weird it sounds in some ways for a person who has been so strongly identified as mother and grandmother. For one thing, a few years ago, I never thought that I would be able to leave my family for 2 weeks let alone 4 months. Some grace shifted me and I was able to carry out my desire to go to Africa.
When I made this decision I knew right away that the only way to survive the missing of my loved ones was to NOT THINK ABOUT THEM. And so that is what I did for the most part. Of course I wrote, and of course I did think about them but I would not allow myself to dwell on them.
For the first time in my life I was independent of the responsibility of anyone but myself. I made choices about my responsibilities. Such as my volunteer work with Hospice Africa Uganda, but that is different than the responsibilities we have in our every day life.
There was a big part of me that did not want to return, hence, a part of the insanity when I did. I am blessed with the most wonderful husband, kids, grandkids, and friends. So I wondered who was this me that felt like I could have stayed in Africa and never returned? I have given this question much attention since my return nearly 3 months ago now. I have let it percolate through reflection, prayer, meditation and many walks on the beach. I have had long conversations with wise friends and family. And though I tend to believe that the insights will continue over even more time there are a few things that I have come to understand.

First of all while I have a deep Faith and believe that death is a transition, I have always had a hard time with the idea that I would no longer be with the loved ones that I have in this life when I die. Somehow I couldn’t let go of the idea that I would no longer “have” them in my life as I currently know them. I now realize in the experience of living a different life for a while that there are many ways to be in the world, many lives to live, and many people to love. While away the children of the Cancer Institute or St Catherines orphanage were my children and the friends I made became for a time my family. This experiencing a different life was a great lesson in the equality of all beings. And in this realization I understood that to die is to just to transfer ones love and attention onto someone just as loveable and valuable as my amazing family and friends.

I was a mom and married by the time I was 17. Since that time I gave birth to two more children and married a man with two children. There was never a time in my life where I was just my own person. I have absolutely no regrets regarding this. The loved ones in my life have been its biggest blessing to date. However, I was always someone else’s so to speak. When the kids all grew up and started living their own lives it felt good. But nothing was as individuating as my four months of independence in Africa. Traveling with my son there felt more like traveling with a friend really. And while I have to admit I clung to him for the first weeks as he is a seasoned African traveler, our seemed like more of a friend relationship as he is grown and independent and free thinking. So there was a grieving over coming home and a sense that I was losing that new individuated person that I had become.

But in time I realized that I have lost nothing. The self that I found in my travels and experiences will always be with me. I know that I could return someday to Africa or travel anywhere and find my way on my own. And if my preference is to travel with my husband or a friend I know that I will not be dependent on them for direction or safety or even more important, peace of mind.

There is not a day that goes by where I don’t have at least one thought about the blessings that I am enjoying being home. My hot shower, my clean flushing toilet, TOILET PAPER, the abundance of different foods, TRAFFIC LAWS, quiet, health care (such as it is), my washer and dryer, all the things we take daily for granted. And of course, most of all, my dear husband, children (biological and otherwise), grandchildren, family and friends. Likewise, there is not one day that passes where I do not miss Africa and for at least a second wish I was still there.

I have to admit that I am just a walking contradiction. But then aren’t we all?

Lamu Island, a paradise that feels frozen in time. Not that change has not happened here. Walking with my friend Swaleh I am given a history lesson regarding the shift of sands even here, in this land that seems in so many ways so ancient. “This was not here when I was growing up, and this is now gone,” he tells me as we tour his village. In his soft voice he teaches me what is polite to say as we greet folks along the way.

Change is inescapable; it is life, an exercise in impermanence. However, for an outsider who is newly experiencing this island, time seems far away and my consciousness finds it easy to pretend I am in a frozen moment. I realized early that the biggest lesson on Lamu is really to just be still! First of all the heat is oppressive and so stillness becomes a priority in order to breathe. Then there are all the nuances that come from a culture whose common and frequent saying is Haraka haraka haiwa baraka. (Hurry hurry there is no reason for.) There are no cars on Lamu. Only a rare motorcycle or the single three wheeled ambulance of uncertain stability. Other wise there are the donkeys. Beasts of burden to be sure, but definitely citizens of Lamu. I swear on Sundays their whole demeanor changes and the look on their faces seems to say, thank Allah, no work today. No tourists to ride me or rowdy boys to lord over me with sticks.

On Lamu you learn to wait. You wait to cool off, wait for meals to be served, wait for the tide to come in, wait for friends who have stopped paying attention to time, wait for the soul to slow down enough to be fine with the waiting. And then one day you think, wow, where did the last three hours go, and then where did that day go and then the last 3 days. And then you even stop noticing time altogether and it stops mattering how long anything takes because, really what else do you have to do?The older men sit all day in the square in their kiquoys waiting for…. something interesting to happen, or to die, I don’t know, but they are there every day, seemingly content, watching, waiting.

But, as with all things, contradictions abound even on Lamu. There is a flip side to all this waiting and that is the busy drive to survive. At first I took the hustle on the waterfront in stride. I was, after all, new to this place and in Africa in general it is not unusual to be hustled. “Madame, madame”…, “Do you need a boat to Shela?” “Tour of the islands?” “Sunset sail?” “Buy this, buy that”; “thank you so much for supporting me.” After a week it became annoying and I noticed my body language and tone of voice was starting to make me uncomfortable. After another week I shifted for the better realizing that this is literally survival for the people here. Fishing and tourism is life and livelihood and the greater some ones hustle the greater their commitment to the people who depend on them to live. “Hapana asante” (no thank-you) or “baadaye” (later) was my standard reply as I continued on my path to where ever it was I was in no hurry to get to.

When I first arrived in Lamu I felt kind of lost. What do I do here?? No work, no friends at that time, incapacitating heat. My thoughts told me that I should either be back in Uganda volunteering or home with my family. What was I doing doing nothing? So I bought a drawing tablet and some pencils, started memorizing those poems I had intended to memorize and settled into myself.

But life being the interesting and unpredictable thing that it is just waits for these moments when you think you have it figured out, that moment when you say to yourself, this is fine, I am fine, its all fine, I can do this… it is then that it all shifts like sand under your feet. The fullness I was finding in quiet suddenly became full of people.

First, Ole Ann came on the scene. She is solid, intelligent, and very Canadian. Canadians have their own set of characteristics that set them apart, two of the most obvious to me have been the drive to work hard and party harder. She is a friend of my sons from Canada and is, like him, returning to Lamu and this very house that they and other friends stayed in while here two years ago. Ole Ann is an Amazon, tall and exquisite. She can party like one of the boys and is still such a girl. She drinks most of us under the table, probably all of us actually. She is a beautiful person with boundless energy and a lot of soul. One day Ole brings us Heather who is here from England. Heather is hanging out waiting to head to Sudan (I think) to start work. She pretends to have a hard shell that she feeds with a sharp whit. It doesn’t take long to see she is only protecting the soft heart she tries to hide within. Over the time together I watch her inner and outer self meld together and witness her find a new fluid freedom. Her outer shell softens and like the rest of us here, she is shifted and shaken, and gleaned like shaft from wheat. I watch these amazing women and myself as we are pared down to our real selves in this ancient world. Where our consciousness starts with the early morning Muslim call to prayer and ends with a star filled sky reflecting off the sleeping wooden dhows floating quietly upon the water. There are others here. Musini, who is a local and is the captain of our favorite dhow, takes us on many magical sailing trips. Satan, originally from Nairobi, now working at the orphanage teaching the kids how to play basketball, wind serf, and be whole. Over the course of the 6 weeks we lived on Lamu I met so many interesting people, some locals, some visitors like us. Some I will stay in touch with, others I may never see again. The amazing house we are staying in is owned by a man from Denmark named Per. It was nice to get to meet him when he came for a week. He is gracious and seems unfazed by the group of strangers filling his house. And of course my incredible son Sequoyah who started this trip with me almost four months ago. And Millie, Swaleh, Rojab, the Shela boys, Musini’s crew, Peace corp folks…

My quiet days of drawing and poetry turned into nights of music, dancing, bon fires and drumming. I watch as Ole Ann, Heather, and I shift from our personal comfort zone and relax into the spirit here. This shift was most apparent in our dancing. I witnessed our dancing morph from the, not terrible but not free, movements of back home, to the free, provocative, sensual movements that in my mind have come to represent African women. African women flow with strength and grace through a world that is full of challenge, struggle and beauty. I felt like we were becoming expressions of this spirit. I felt like we were turning into African women. Which of course intellectually I said was absurd but in my heart I knew was true. The music itself was many things, African, hip hop, Bob Marley…the music was not the point. The point was that we became movement itself in this wild and alive place. It was a part of the magic that manifests here, in the cracks of stillness, in this pause of Lamu. In this moment I felt like God was having such a good time living in a body through me.

And then there was the sailing! The wooden dhows have their own soul, own personality, each. They all have their own saying too painted on their sides, “I am not lucky, am blessed,” “Like same people everywhere” “Freedom,” “Beauty is the butterfly,” and Musini’s dhow, “I am not afraid of storms.” These sailors and fishermen who where born here blow my mind. They swim from babies and can swim across the channel from island to island like it was nothing. They easily swing the sail across the bow of the boat to catch the wind and tack across the water. It took a lot of strength for a few of us to pull the sail working together; usually it is just one doing the work. No wonder these men are so strong. They seem to think nothing at all about fishing without poles using line only. They bathe in the ocean and sleep on the dhows.They know the tides and the wind intimately.

And of course the food here is amazing. Mango, passion fruit, banana, pineapple trees grow everywhere. I ate fresh fruit every day. Ole and Musini are great cooks and thanks to them we ate fresh fish and curried dishes with fresh coconut milk almost daily.

In a short time here in Lamu I was as a fish hooked. This raw hot stillness had captured my heart, my soul. Leave?? I have called Africa my home for almost 4 months and had almost forgotten that I was away from home and loved ones. I was as a sail on the horizon at sunset, doing just what I was supposed to be doing, simply, beautifully, and purposefully. What else was there? Where else would I be if not in Africa? Who else was I but this? Who am I now after I learned that I was not who I thought I was? And now I go home to the place that is being held by my loved ones. Like a bookmark holding the place in a story that has already been told.

And of course none of this was true and all of this was true.

I am a wreck when my son and my new friends drop me at the airport to fly home. The man at the counter starts to tell me that my carry on bag is too heavy but loses all courage, as any good man does at the tears of a woman, and nods me through despite dimensions and weights.
Leaving Lamu, leaving Africa, felt like my arm was being ripped off slowly. I cry all the way home and grieve as if I had left a lover that I will never see again. I heard someone say that leaving Africa will make even a grown man cry. Now I sit here in my beautiful, comfortable home with my amazingly patient and loving husband and the best family and friends anyone could have and I am in mourning. I feel selfish and sad and less grounded than I have in many years. I wonder what spell has been cast on me?? There is a definite belief in witchcraft in Africa and now I know I have been bewitched. Where is the antidote that will bring me back to myself? What did Africa do to me while I wasn’t looking? I remember thinking 6 months ago that I was going to Africa to be changed.

For several reasons it was time to leave Uganda and head to Kenya. But before moving too far away from lovely Uganda, thrilling Kampala and inspiring Hospice Africa Uganda I would like to share some of the experiences there that did not involve volunteering.
After Art arrived, he, Seqyoyah and I spent some time being tourists. We went on a safari to Murchison Falls. Three days of driving around in an overland van was more fun than I expected. It was exciting to see all these amazing and beautiful wild creatures so close and in their natural habitat. As a bonus we had a hippo who wandered our camp at night. That made even going to the bathroom an adventure! My favorite animal is the giraffe. They are graceful, lovely and gentle and seem wise. We also saw lions, water buffalo, gazelle, zebra, wart hogs and tons of amazing birds (which really made Art happy).

Then we headed South to Kabale to go gorilla trekking. It was a 10 hour bus ride from Kampala to Kabale. There was literally only one quick stop by the side of the road for us to scurry into the bushes for a “short call.” I have found that a long skirt is the most practical travel outfit not only for coolness and comfort but lends itself to an illusion of modesty while peeing along the side of the road.
Welcoming us at our destination was rain like nothing I have seen before. We were instantly soaked, there were rivers running through the streets and it was everything we could do to keep laptop and guitar from being ruined. I had heard of people actually getting swept away and drowning in big downpours and for the first time I could really believe it. We jumped into the closest cab to drive the 2 blocks to our hostel. The weather had turned somewhat cool and the rain continued for several days so that everything remained damp and smelled musty. The mud was everywhere.

Luckily on the day we were to go gorilla trekking the weather improved and it didn’t rain while we were in the jungle. This was really good because as it was we slipped and slid down hills and through the thick jungle brush for about an hour before we came upon the family of gorillas who live in this part of the Bwindi National Forest. The hour or so we spent with them was amazing. They seemed to just take our presence in stride. One of the big Silverbacks (Gorilla become Silverbacks at 15 years old) walked within 6 feet of us which was a bit unnerving. There were 4 silver backs, several adult females, several younger adult males, a toddler, and a young baby. Baby clung to mom’s back as she walked through the jungle.
The mountain gorilla was endangered and its number dwindling due to poaching and local hunters. The Ugandan people finally realized the importance of protecting this amazing cousin of ours. Since they have started protecting them their numbers have gradually increased. The expensive fee to see the gorillas goes to continue their preservation.

Then to Lake Bunyoni. Art and I stayed on a small island in a cabin overlooking the lake. It was peaceful and quiet with lots of incredibly beautiful birds. There are many islands on this large lake and we took a boat tour of the lake and its islands. As we passed each island our guide told us the story that went along with it. Of the islands the most interesting were Upside down Island, Lepers Island and most fascinating and horrifying, Punishment Island.

I had already heard the basic story of Punishment Island the previous day. It was where at one time many years ago a girl who became pregnant out of wedlock, or was “shown” not to be a virgin on her marriage night was taken and left there to starve. The story horrified and fascinated me and I could not get it out of my mind. I had conjured up a fantasy about a group of girls surviving the island and over time forming their own society living and surviving together. They would raise their children together; live off the land, fish. There is certainly plenty of fresh water. And there are fruit trees everywhere here. It was possible…. But as we approached the island my heart sank and my illusion vanished. It was by far the tiniest island I have ever seen, with one scrubby tree in the center of it. My horror increased as our guide told us the rest of the story. There were other Islands that a strong swimmer would be able to reach. But only boys were allowed to learn to swim. Swimming was forbidden for girls in order to make sure they were duly terrified by the threat of starvation on Punishment Island for not being “chaste.”
I wondered how a mother would feel relinquishing her daughter to such a fate, I wondered how many lovers cried or attempted rescue, I wondered how many of the girls were there due to rape?

In an attempt to ease my horror and sadness my imagination took a new direction. I envisioned a dark night when everyone else was sleeping, a young girl walking quietly to the lakes edge and slipping soundlessly into the cool water unable to resist its silky feel, swimming out a little further each night, enjoying the increasing strength of her young limbs. Sensing that this was not just enjoyment or rebellion but with a knowing deep inside that she was somehow saving her life.

Rereading what I have written today made me realize how so many of the stories I have told about my time here in Uganda have been sad and intense. Someone might get the wrong impression that Africa is all dark tragic sadness. Really Africa is all things. And here I want to put a plug in for visiting Uganda the next time you are thinking of visiting a third world country. The Ugandan people are the friendliest group of people I have ever met anywhere. They have a great sense of humor and love to laugh, eat, dance, live. They do the best with what they have, which is very little. Their lack does not diminish their generosity. The capital city Kampala is a fast fun frenzy that if you let go of personal bias will provide no end of entertainment. Kampala is relatively safe (if you don’t count traffic accidents). You can walk down the street in Kabalagala (an area in Kampala) at night enjoying the music, food and general festive atmosphere. This is something that does not exist in Nairobi where walking down the street after dark is like asking to be robbed. Uganda has a lack of sophistication that is endearing. But fear has kept many tourists away. Fear of Ebola; fear the LRA, fear of terrorists’ attacks. There was an outbreak both Marburg (cousin disease to Ebola) and Ebola while we were there. Both were well monitored and there were few victims. As my son said, you have a much better chance of dying from Malaria than anything else here and that doesn’t stop most people from traveling. Despite that notorious video that came out the LRA has not been in Uganda for many years. And, well, terrorist attacks are a risk anywhere so why worry. Uganda has been called the Pearl of Africa due to its natural beauty. It has the largest number of bird species in Africa. Come and you will get frustrated, confused, impatient, excited, thrilled, exhausted, full of wonder and not for one second be bored! I will truly miss it!

All hospice clinicians will tell you that the nature of the job is not predictable. You can make your plans thinking that you are well organized and productive and then have the whole day be one unexpected event after another until at the end of the day you can only laugh at the folly that one would ever think they had control in life. Thursday was one of those days with its own particular African flavor.
I was scheduled to go out to do home visits with nurse Roselight and Dr. Ludo. The clinicians are driven by hired hospice drivers in mini vans to the patient’s homes. The driver generally waits outside for the visit to be over and drive to the next visit. This day Dr. Ludo drove us in one of the Toyota SUVs owned by HAU. We planned on 5 visits, three new patients to enroll and two visits to patients already on service. The first person was not at home having gone somewhere else leaving us to wonder if they were really appropriate for hospice services. We left a card and asked his daughter to have him call when he got home. The second visit was an elderly man with prostate cancer and partial spinal cord compression who was having pain. He had weakness in all limbs and was only able to stand and walk with the assistance of a stick. The neurological compromise started over 6 months ago and it was doubtful that at this point anything could be done about it but we started him on dexamethasone anyway and of course morphine. He lived in a mud house, as many do, at the bottom of a hill and it was easy to imagine a flood running through his front door in the torrential rains here.
The roads in Uganda are the worse I have ever seen and pretty unbeleivable. Most of them are dirt and the frequent hard rains leave giant ruts that challenge even a four wheel drive vehicle. We wound around attempting to find our next patients home. None of the houses have numbers and you are lucky to find a street sign. The directions on the patients chart are things like, “follow road to large mango tree at the corner, turn left and continue to the chapatti stand then right, turn on the road across from the third black gate and stop at the end. Then walk 1 km to chained dog, house is next door” etc. We meandered down roads that literally looked impassible by car, having to turn around in tiny spaces many times. Once again I was impressed with the driving skills of Ugandans. But accidents do happen and at one particularly narrow turn Dr Ludo drove the front left tire right into a stone drainage ditch. The back right tire was off the ground by several feet so that I had to climb out dropping to the ground. My first thought was, well this is a fix. Second thought, I wonder if there are tow trucks in Kampala and we might be stuck here for a while. As my mind was pondering our predicament within seconds 10 guys manifested out of nowhere. Roselight and I were instructed to get in the back seat on the elevated side of the car for weight, Dr Ludo put it in reverse and the guys all worked together to push us out of the ditch. We were back on the road within seconds and the guys who helped us disappeared as quickly as they had appeared. Only in Africa!
We finally found our patients home only to discover that she had died over the week end. It is common here that the family does not call at a death but immediately take the body to the family village which is out of the area for the burial. We sit and talk to the adult step son who had remained behind lending emotional support and encouraged him to have the husband of the dead woman contact hospice for bereavement.
There were no more ditch instances that day but it still took us about 40 minutes to find our next house. We woke the family up who were all asleep on the living room floor. Apparently they had been up all night with the patient who was not doing well and she was taken in the morning to the hospital. By the end of the day we had only seen 2 live patients out of the five scheduled. Some things about being a hospice nurse are the same in both the US and Africa. And some things are very different.
The next day I was back at the Children’s Cancer Institute where the problems just seem to get worse with each visit. This time we find Sampson, who has AIDS and Non Hodgkin’s lymphoma. Sampson is 16 but like many of the children here looks much younger. He was here with his mother who was caring for him while he went through chemotherapy. She became very ill herself with her AIDs and was hospitalized leaving Sampson with his older sister to care for him. As he tells it he ran away from her as she was being cruel to him. He refused to go back. Sampson is due for another round of chemotherapy in 2 weeks. His village and what other family he has are many hours away. He currently is on ARVs (antiretrovirals) and determined to live. He just wants to be able to remain on the hospital floor until he can get his next treatment. He is very weak, barely able to stand and walk. He is skin and bones and appears in pain. The hospital staff demand that hospice take him in as he could not stay there without an adult. It was explained that this is not what hospice does. There are some local hostels that will take hospice patients in while getting or waiting for treatment but they all said that he needed an adult to stay there with him. One very courageous UK physician who is volunteering her time at the Children’s Cancer Institute states that she will make sure Sampson is not kicked out of the hospital over the week end, this being Friday and no solution found for this sad boy yet. We refill his liquid morphine making sure that he understands how to use it, gave him a blanket for the cold hard cement floor of the hospital and assured him and the hospital staff that we will attempt to find a solution for Sampson by Monday. As we are leaving Dr. Grace (a perfect name for her) the UK doctor, tells us that Sampson is only receiving palliative chemotherapy and that he will not live much longer even with this treatment. I become overwhelmed with sorrow once again in this sad place thinking about how he is so vigilant about taking his ARVs and coming back to the one place where he has some hope left for help and a cure.
There is only a 3% cure rate for cancer in Uganda. This is most likely due to late diagnosis, less than optimal therapies, and poor compliance. It seems to me a terrible disservice to most of the families who bring their children here from far away with advanced stages of cancer to be told that they should continue to come back over again for futile treatment when they can barely afford to eat let alone travel the distance to Kampala. I do not believe that many of them are told the prognosis, as death is not an easy subject in Uganda, although it is everywhere. I think of the guilt a parent must feel if they do not do everything the doctor says is needed to save the life of their child. So they give up valuable jobs, leave other children at home and live for weeks, even months sleeping on the hospital floor or the veranda in hopes that their children will survive.
It is not that this problem is unique to Africa. Certainly in the US people are treated for diseases with the latest in technology despite the prognosis. There is physical, psychological and financial suffering. But these costs seems so much more immediate and personal here.
As I am walking out the door I see a mother with her 4 month old baby who has a horribly deformed face (most likely from Burkett’s lymphoma which causes such deformities) attempting to nurse. It is difficult and awkward as half of her face is so taken up by tumor she can barely reach the breast. I am so emotionally drained and overwhelmed that I turn away. I feel the guilt of a survivor, returning to my comfortable lodgings and eventually to my wealthy country and my privileged life.

The Mulago Children’s Cancer Institute is where, so far, I have spent most of my time. Josephine is the nurse who goes there and I have found that it is helpful to assist her as there are very many children on hospice there. What she said to me the first day is really, all of these children should be on hospice for pain control. When we make visits to either home or hospital we anticipate the medications the patient being seen will need and bring that. Morphine is dispensed in three concentrations, 5mg per 5 mls, 50 mg per 5 mls and 100 mg per 5 mls. The different strengths are color coded, green, red, blue, and put into 500 ml plastic recycled water bottles. The label will indicate the concentration, the current dose, the volume dispensed and the patient’s name. The nurses carry a kit as well with the most needed and frequently used medications, Colace, dexamethasone, metronidazole, haloperidol, to name a few. Most of the nurses currently working for HAU have gone through the 9 month training required to be prescribers of morphine.

We walk into the ward that is crowded with beds and cribs all containing a very sick child. Parents squeeze into the small space between beds. I notice one woman lying on the floor next to her sick child’s bed nursing a baby. There are families and children outside sitting on steps, leaning against the walls. I notice that behind the nurse’s station, next to the large red contaminated waste container, is lying another child and his mother. Seemingly the nurse’s station is not used as such.

Josephine is whisked away by the hand by one of the doctors to go see a patient who is in pain. The Children’s Cancer Institute has run out of morphine and the child, who is really a young woman of 19, is crying in pain. She is familiar to me as I saw her at the Mulago hospital a few days ago. They have not gotten a definitive diagnosis yet. She has tumors behind her right eye, her scalp and right foot. These are grossly disfiguring and I am told she has essentially lost her site in the right eye and is now having difficulty seeing out of her left. These tumors remind me of the disfigurement of so many of the children here who have Burkett’s Lymphoma, which is an AIDs related cancer. As I walk through the wards it seems to be what most of the kids have here. Luckily this patient is enrolled in Little hospice Hoima an affiliate of HAU and also that Josephine always brings extra morphine with her as frequently there are hospice patients at the institute that were not expected. She gives our patient 7.5 mg of liquid morphine and she is pain free within a short time. Her caregiver who is her sister looks to be about 16. Apparently the parents have both died of AIDS and there is only an aunt who visits infrequently.

We visit Joseph, who I had met at an earlier visit. Joseph is 4 years old with Burkett’s lymphoma. He has literally the most horrendous tumor I have ever seen. It is overtaking nearly his whole face. There is a small area on one side of his mouth that is still viable and which he can take small amounts of liquids. His tumor is fungated and the metronidazole tablets that are crushed and placed on the wound to diminish the odor of rotting flesh have limited effectiveness. His parents are with him. His dad tells me that they took another biopsy today as the chemotherapy is obviously not working. They are discharging him today to return in 2 weeks for the biopsy results. Their home is hours away and they have no money for the bus ride. His dad tells me that they have been away from home for many weeks and that it would mean so much to them and to Joseph to go home to their village. Hospice tries to assist people with transportation costs when they can but Josephine did not bring any money for this. Between the young doctor volunteer and myself we easily come up with the 15000 shillings ($ 6) for their ride home. Joseph is so happy to be going home that he finds the strength to ambulate out the door which is the first time in ages that he has had the ability to stand. I watch in wonder at the idea of taking this very sick child on a bus for hours. But people in Africa are tough and do what must be done with little complaint. We make sure that he has enough medications, especially morphine to last until they return.

Burkett’s Lymphoma is a pretty curable cancer if caught and treated early enough. Mulago hospital in Kampala is the only place to receive chemotherapy or radiotherapy in all of Uganda. As I have heard it said, to tell a family who lives in a village far away that they must go to Kampala for treatment is like telling them to go to London. Many people have never left their village and very few have the funds to travel, let alone pay for treatment. The only assistance comes minimally from a few organizations. Hospice Africa Uganda attempts to pay for a child’s first chemotherapy round. Their resources are very limited but they do what they can. I can only imagine the horror of being told that my child had a potentially curable disease but treatment was inaccessible to them because I could not afford the cost. “It is very difficult,” Josephine repeats many times today with a certain resignation in her voice.

I asked around about the morphine. How could this happen that they ran out! Where does it come from and why would it not be readily available to suffering children. I was absolutely appalled and very angry. I directed this anger at the first world countries, like my own, that could, without conscience go into a country like Uganda, exploit its resources for profit and turn a blind eye to the suffering of that countries children. Morphine is very cheap. 40 American cents can keep most cancer patients pain free for a week.

It was the next day before I got any insight into this problem and as with most problems related to the distribution of resources, especially in a third world country, it is complicated. We were invited to lunch at Dr Annes home on Saturday. There I met a woman who works for an NGO that monitors the distribution of morphine in Africa. This young woman was working specifically here in Uganda. She described some of the problems she has come up against, from lack of ink cartridges for making labels, to running out of recycled water bottles, to shipments of the powder being mysteriously half of what they were supposed to be. And then there is the general lack of organization and infrastructure that seem to plague all of Africa. She does not believe there is much of a problem with diversion, as far as she can tell it is not sold on the streets. Uganda, however is much better off than most of the rest of Africa where there is no morphine at all. Many African countries resist the use of morphine as being a dangerously addictive drug. She specifically sites a hospice she visited in Rwanda where the nurses where so frustrated trying to care for the terminally ill without the ability to control pain. After much education and negotiating with the Ugandan government (much done by HAU), morphine has become increasingly available here. As it turns out Hospice Africa Uganda is the only manufacturer of morphine from the powder that is brought into the country. They manufacture it and then sell it for a very nominal profit to those who then distribute it to the hospitals. They hope that with the small profit they will be able to continue the outreach and education regarding pain control in Uganda and in time to other African countries as well. She tells me that she did not know that the Childrens cancer institute ran out of morphine but promises to look into it right away.

At this lunch we also met other dedicated NGO workers who are assisting the Ugandan people. One man said,” I came to work here for 6 months and I am still here 9 years later.” He is providing education for the children, many of whom are orphans, in the slum here in Kampala. Another man works with the refugees that are still living in the northern part of the country. There were 2 Irish doctors present who came to volunteer their time as well. I felt privileged to be in such a group of people. The two NGO men were there with their families and there were beautiful little, very healthy looking, children running around everywhere. It was a good reprieve from the Children’s Cancer Institute and I wonder how many of the same children will be there on Monday.

It is Friday afternoon and after a 2 hour cab ride find ourselves at the gate to Hospice Africa Uganda. We head to what seems to be the main office. When I explain that I am there to volunteer they are confused and send me to someone else who checks and tells me that they cannot find any of the information I had sent them. They had confirmed months ago that they had recieved it. My son and I look at each other, laugh and say “T.I.A” (this is Africa) for the hundredth time on this trip.
They make a call to Dr Eddie and I am confirmed as a legitimate nurse and volunteer. The whole mood changes and everyone seems to appear suddenly out of nowhere to welcome us. I have found Africans in general very friendly, but Ugandans in particular. They are extremely affectionate as well and hand shakes and even hugs when introduced are the norm.
We are put up in one of the guest houses here which are very adequate. We are told to ask for anything we might need and feel very looked out for. The first day we are given a tour of the facility. There are several buildings that house the pharmacy, clinic, administration, education (with library) and doctors and nurses. As I am introduced I am struck by how professional and seemingly organized it all is. In fact it feels very much like the hospice organization I am familiar with.
HAU was founded by Dr Anne Merriman about 20 years ago. She is a British woman who was called by her profession and her Faith to do something about the suffering of the very ill and dying people of Uganda. She is now 77 and still very much involved.
We are invited to her house for dinner soon after arriving. I am nervous because I admire her so much. She lives in a very comfortable but extremely modest home. There are two other volunteers joining us for dinner. Both young women, one a physician from Ireland and the other a physiotherapist from the UK. We share our stories and have a lovely evening. Dr Anne is warm and down to earth and I feel comfortable with her immediately. Tomarrow we will start our clinical time here.

Day one, Monday.
Every morning is started with prayers, which consists of a gospel song and a brief prayer. All the staff seem to join in. Then there are announcements if any. That first morning Sequoyah and I are intoduced and asked to say a few words about ourselves. When it was Sequoyahs turn he stated that he had no medical experience but that he was happy to be put to work doing anything that needed to be done including playing his guitar if that was something some of the patients would like. Dr Anne had already gotten him in touch with a man she knew who assisted with the children in the local slum and they planned on meeting on Wednesday.
After prayers and announcements there is a clinical report session where difficult cases are brought up to the teams and discussed. There are 5 teams. HAU has a census of over 1000. Many of these patients are AIDS patients and many of those are discharged after their pain is stablized. Not being a government funded program they can take any patients on who need symptom control even if their prognosis is not set at 6 months or less. In each team there is a team leader who is a nurse, a visit nurse and an MD. Sometimes it is the whole team that goes out and sometimes just the visit nurse. Each team goes into the field 3 alternating days a week. The other 2 days they remain on site to assist in the clinic that exists on site, or do paperwork. The ambulatory patients that are able to come to be seen there. Bed bound or hospitalized patients are visited.
Patients here often continue to receive treatments as the funding here is very different than the US. Hospice of course does not fund treatments but there is a lot of care coordination with the oncologists, hospitals and AIDs organizations. Many, many Ugandans are HIV positive and the health organizations attempt to get as many on ARVs as possible. Other than AIDs the patients are primarily cancer patients. One physician told me it is not unheard of to take on a cardiac or respiratory patient but is unlikely to happen unless they have pain. There are many children on hospice here. Many are HIV positive and many have cancer. We have heard from the people here that cancer rates in Uganda have risen drastically in recent years. There is an increase in industry and with that, pollution. One person told Sequoyah that there was a plan to dump DDT into Lake Victoria to try and kill the hyacinth that has started to invade there. It interfers with the fishing! The burning of plastic is common as there is poor garbage infrastructure. Bottom line, I can see some very immediate reasons why the cancer rates have risen.
That first day Sequoyah joins us on our visit with one of the nurses to the general Kampala hospital. As I said, they are very welcoming to us and never gave it a thought that he should not see the patients also. I keep telling myself that I should not be shocked by what I see and I am continually shocked nonetheless. This hospital is the main hospital that people from all over Uganda go to who have no money. It is 6 floors. I am told that the 6th floor is where the “paying” pts are treated and it is much nicer. We do not make it to the 6th floor.
Our patient is in a ward which is a very large room that is filled wall to wall with beds. Every bit of space in the center of the room has beds also. There is literally 2 feet between beds at best, barely enough room to walk around in. Every single bed is filled with a man, woman or child. No screens, no curtains,no privacy whatsoever.
Our patient, Julia, has rectal cancer. She is obstructed and they were intending to do surgery but she has declined so much that even the surgeons have given up that idea.
I have to pause and tell you here that patients must be cared for by their family. There are not enough nurses to care for the patients. There is no food provided by the hospital so this is brought in by the family. For poor families who live hours away this is an extreme hardship as you might imagine. On top of that the patient provides their own medications. The doctor will write a prescription and the family will go to either the hospital pharmacy or one of the many street side pharmacys and purchase the medication and bring to the patient to be kept at the bedside and administered by the patient or family. (And we thought our health care needs improving!!!)
So for Julia, our patient, her caregiver is her 12 year old daughter. There luckily happens to be one other empty bed next to her moms where she is sleeping. I wonder as I watch her if she understands that her mother is dying and wonder what will happen to her then. Looking at her mom I think it is douptful that she will be leaving the hospital alive.
Julia is nauseous and vomits into a small bucket and then asks us to assist her to the (literally) bucket under the bed. At this point Sequoyah quickly pardons himself and goes into the hall.
We see several other patients here. As you walk the halls and outside corridors there are people “camping” in every free space. Mostly they are the patients family. Some are patients waiting for a bed. I am overwhelmed by human bodies, poverty and suffering. It felt at time surreal, and I could imagine it was just movie set. Like those war movies where there are cots of suffering beings lined up in rows to waiting to die. Not that everyone there was imanently dying, I am being dramatic, but it felt dramatic.
We left there and headed back to HAU by way of the vans that transport the clinical staff. The roads are so bad here and traffic so horrendous that they have found it much more efficient to have drivers take the docs and nurses to where they are going. Its a good idea as I would have been too shaken up to drive after my first day.
That was only day one, much more to come.

Milamani backpackers was where we stayed the first four nights we were in Africa. It Is in Nairobi but down a fairly quiet street. There is a 24 hr security guard at the metal gate who lets people and cars in and out and a dog named Scooby do who assists in guard duty. Scooby has the run of the place and is not above snapping at someone who might be sitting in his spot. Most of the travelers stay in a dorm that consists of 5 bunk beds. The first few nights Sequoyah and I had our own smaller dorm room to ourselves which was conducive to my acclamation process. The beds are $10 US a night. There is an open air restaurant with a bar and fire area in the center. This is where everyone mostly hangs out when not in their room or on the computer. It is has a rustic charm. It did take me a day or two to get used to the dorm style bathrooms that you share with all the hostels residents male and female alike.

The food is different here and I am getting used to it. I really like the chapatis which remind me of a very thick and greasy tortilla. It is relatively expensive to eat at the hostel and so for breakfast we walk to a small very “local” open air café. We eat chiptatis, beans, cooked cabbage and very sweet chai. We are the only white people and this is a source of many stares. But the owners always seem happy to see us. The breakfast costs less than $ 2 US. Every one mostly eats with their hands. There are sinks or containers of water in most eating places to wash before and after eating. No towels of course.

I have learned to carry toilet paper with me always and am prepared for squatting over a hole, which actually is preferable to most of the toilets I have encountered. There is a large barrel of water in the bathrooms with buckets to dip the water out to “flush.”

We are constantly meeting the most interesting people here. Kevin, an older white Kenyan seems to be a fixture at Milimani. He owns a home in Uganda near the border of Congo and as best as I can understand it , his job is to facilitate the transfer of aid into the Congo. I imagine this is could be a sketchy business at time.

Ali is 42 yrs old and also a native Kenyan with Pakistani parents. He also lives in Uganda but works as an IT guy in Nairobi. Milimani is his home base while working. Ali went with us one day to the Kibera slum. I could tell that he was impressed with Sequoyah’s relationship to the people there and also somewhat surprised at the conditions despite having lived here for so long. It is always different to see things first hand. He had some very good ideas regarding the establishment of a web page and how, if the means were ever there, teaching the children how to become comfortable learning the computer.

Both Ali and Kevin are open and friendly and seem happy to meet new people but they suffer no fools and do not hesitate to express their strong minded opinions. They are vastly independent individualists that remind me of the men I met on a trip in Alaska years ago. I speculate that a white man born in Africa must fight their own particular battles to survive here. (I have yet to meet any white African women)

Then we meet Paul and Bill. Sequoyah brought a suitcase full of books for Paul from a friend in the US. Paul is in his senior year of high school. He is a voracious reader and has not limited his education to the school curriculum. He is well versed in the politics of Africa and the world. He said he would like to make a change in the world and I believe he will. He lives in Tanzania and took the bus to Nairobi from his home in Dar. He arrived at night and was almost immediately robbed at knife point.
Paul’s friend Bill, who he is staying with while here, lives in Nairobi. He is quiet and thoughtful, watching and listening all the time. Both young men are very intelligent and will certainly be an asset to Africa as they grow up.

THEN there is Jennifer. Jennifer is from Northern Ireland. She is petite, has red hair, green eyes and freckles. A classic Irish beauty. She is 22 yrs old and came to Africa months ago with an NGO. They started their work in Gana. The last few weeks she has spent living in a hut with a Masai woman and her children. No electricity, no running water, a 20 minute walk to the next hut. She told me how at one point one of the children tipped over the lamp oil container and after that they had no light after dark as something like that is not readily replaced.

Jennifer is understated in her quiet humble way. In truth she is spunky and brave. She travels confidently through the streets on her own, which I very much admire. Her next project in Tanzania was not inspiring to her and after talking to Sequoyah decided to visit the Kibera slum with us. When we left Nairobi she was established as a volunteer teacher with them for the remainder of her time in Africa.

We take a bus with Regan to a small town called Miguri. He needs to check on the land that St Catherine’s has purchased and we would like to see it. It is an 8 hour bus ride with one bathroom stop. I deliberately drink as little as possible and have no chai that morning. The driving in Kenya is really insane. I have no doubt that Sequoyah saved my life at least 3 times the first couple days walking around Nairobi. They drive on the other side of the road here and so the first thing one must get used to is looking right instead of left first. Other than having designated sides of the road to drive on, there seems to be no rules. And I think even that one is really just a suggestion. You could not drive here if you didn’t have a horn in good working order. It is standard practice to honk your intention to pass someone or to let a vehicle or pedestrian know that you have no intention of slowing down for them, so get out of the way fast. I have not seen anyone run over yet but witnessed a few close calls including involving myself. In Nairobi the streets are full of more traffic than I have ever seen in that amount of space. Buses, cars, taxis, matates rule the road. Pedestrians have no rights and must find their own way across the streets. There are no cross walks, few lights, no stop signs. Many of the people who live here are either very brave or have just lost their patience for it as they just step out in front of the cars to cross the street. It is like playing a game of “chicken” but a more deadly version than I grew up with.

On the bus I decide that it is better not to watch the driving and concentrate on the countryside instead, which is fascinating. We travel along a narrow highway, with no room to spare, thru small dusty towns. The speed bumps are the only thing that protects the people and animals from being run over. If our bus comes up behind a slower vehicle he will pass, it seems, no matter how close the oncoming vehicle happens to be, sometimes missing it by inches. The Matatus are the worse. They are mini buses that literally cram as many people and animals in as possible and then go screaming down the road at an ungodly speed. We passed one that had just run off the road. We went by too fast for me to see it there were casualties.

At one point in our journey to Uganda we took a 2 hour cab ride rather than take a matatu, our only other option. While riding with Ben, our driver, I started to get a better understanding of how it all works. For all the speed we traveled, (I noted at one point 120 Km/80 mph) Ben was a very good driver. There seems to be a whole system of signals that are apparently agreed upon here. These consist of honking, blinkers, and hand signals. East African road language. He got us safely to the bus station for another long bus ride over the boarder to Uganda.

On the bus to Uganda I sit next to Javenta and her beautiful 5 month old baby girl Faith. Javenta tells me that she is soon to join her husband in Chicago. He is a doctor and she is a teacher who have acquired Green Cards for the US. He has been there several months already looking for work. She is on the bus returning home after a short trip to finish the last of the money exchange for her Green card. She expresses how strange it was to hand over so much money (and here she holds her hands about 12 inches apart) to receive just 3 small pieces of paper in return.

Javenta asks me what it is like in Chicago. I tell her I have never been but share what I know. She has many questions about the US. Can you buy land? What are your crops? What foods are available? I tell her that you can get anything in the US for the right price.
I spend much of the journey holding Faith. She sleeps easily on my shoulder and I am grateful for the baby fix. She is a happy, smiley, lovely child. Her mother is graceful in her manner and speech. We both have to repeat everything at least once due to the difference in our accents. We laugh and take it in stride. When we reach our destination we exchange information and I tell her to call me when she gets to the US. She says she will. And I decide that riding the bus is a wonderful way to travel.
More to come, love to you all.

Today Sequoyah took me to the Kibera slum. It is one of the largest in Nairobi only about a 15 min bus ride from Mirimani backpackers hostel where we are staying. Kibera was not so very different from what I imagined but imagining is far from experiencing. Nothing really could have prepared me. Poverty of the most profound sort that is not just a vision in the mind but that is experienced by every sense of the body. We wound thru a maze of narrow pathways between structures. Homes made of mostly mud, cement and coragated steel. All materials are utilized. Sewage runs in streams thru these “streets.” Garbage is piled up in mounds everywhere. Truly my sense of smell was most assaulted. The smell of life packed into a small space, the smell of garbage and excrement, charcoal cook fires and unfamiliar food. The children everywhere repeating the standard greeting “how are you?” “how are you?” And I respond,”Fine, fine and how are you? Over and over as we passed. Obviously we stand out.

We followed Sequoyah’s friend Regan through the maze to St Catherines school and orphanage. St Catherines was started by his father, a Christian minister, years ago in response to the need that existed here. There are 24 “adopted” children that they care for and about 100 students from kindergarten up that attend the school during the week. On Sunday he has services there. They are truly doing God’s work in its rawest and most profound form.

Regan was giving me the tour of course as Sequoyah was returning after a year and half. He lived here and taught the children while in Africa before. There were some changes since then, including a whole new building, if you could call it that. It was more like two small rooms above the kitchen and bedroom of the older boys. I know that I cannot do justice to the scene but I will do my best. Imagine stepping though the door way into a very cramped and dark (the electricity was out) low ceiling hall that led thru to the steepest most narrow wooden staircase ever made. Upstairs is the girls living quarters which is two rooms about 10 x 10 crammed with several bunk beds. One small window to each room. Of course it is hot anyway and much hotter upstairs. I could not help but think what a complete fire trap it was up there with its single exit down those stairs. The construction is amazing and its seems that even upstairs is a dirt floor. The walls may be cement or clay over a sketchy thin board framework. But I was too busy thinking about the earthquakes we have back home and wondering if they have earthquakes in Kenya too to inquire further about their building materials.

So while the whole physical scene itself is overwhelming I am being introduced right and left to all the people, adults and children that live and work there. They are so happy to see Sequoyah again, quite a reunion. Hands are clasped, hugs given. They obviously love my son and are very happy to meet his Mom.” Sequoyah is a celebrity here” Regan tells me. And I can see it.

By this time it is all that I can do not to break into tears. Tears of frustration for the injustice of this poverty, tears of sorrow for the suffering here, tears of amazement for the grace and beauty of these people I am meeting and tears of utter gratitude for this amazing young man, my son, who is so at home here, so loved by these people and so present for them. It seemed to me that it would have been very selfish of me to cry there and then and so I do not.

Later I asked Sequoyah about the toilets as there were obviously none indoors. He tells me that the only toilets are privately owned. A line of wooden outhouses numbers on them. They cost 2 shillings per use, all opportunities to make a living utilized here. He told me about the “flying toilets.” What people must do who cannot afford 2 shillings every time they need to use the loo is use plastic bags. They then fling the bags as far away from their homes as possible, landing, as you may imagine, anywhere.

We visited the men who grind bone to make jewelry without masks or ventilation. The bone powder filling the air. They sit there for hours, days, weeks, lifetimes breathing it in. The jewelry is beautiful and I bought a bracelet and earrings for their asking price, about $ 4.

There were men and women carrying large bundles of wood on their backs. They cut it in the forest and carry it back to sell. It is totally illegal and sometimes they get shot. Regan told us a story of how in an attempt to shoot one of the thieves the person missed and the wild bullet killed a woman in the slum.

People do not dress in rags here. They are clean and neat. They, at least those I met, were gracious and very friendly. They are big on shaking hands, and I received a few hugs. There were smiles all around. Kenyan accents are strong and I struggle to understand everything that is said.

Last public testing that was done of the children from St Catherines they ranked very high. With some financial help they were recently able to purchase land. Their goal is to become self sufficient and grow their own food with hopefully enough left over to buy books and other needs. Interestingly the land is about 7 hours away by bus. They have not worked out all of the kinks but the inspiration and motivation is there. And the intelligence. There may not be a lot of people with higher education here but intellectual sophistication abounds. I think living on the edge of survival must make people smart.

In general all the people I have met, residents and foreigners alike, have a much more in depth and sophisticated analysis of world politics, and specifically how it relates to the U.S. than most U.S citizens do. I have had some awesome and educational conversations in the short time that I have been here. But that will have to be the subject of another blog. Or not.

I am blessed to be alive and here and to have such dear friends who would actually take the time to read this. Baddaye! (see you later)